Category Archives: heart stroke narratives

Stories Needed for World Stroke Awareness

Stroke is the major cause of long-term disability among adults and older people and a significant factor in the increase in disability with aging. Yesterday was World Stroke Day. For sure, stroke is a catastrophic event that impacts on all aspects of a person’s being, forcing individuals to alter their lifestyle and reconstruct their identity. Each year in the United States more than 795,000 have a stroke and it also kills almost 130,000 Americans each year-that’s 1 in every 18 deaths.

For the survivors and their families, there are changes and social challenges that occur. I know firsthand, that this includes an increase in anxiety, fear of having another stroke, loss of confidence and even depression. As one of the lucky ones who experienced a transient ischemic attack, I realize how important the need is to tell this story. It’s apparent that many medical centers recognize the need to provide follow-up for stroke survivors, enabling the patients to express their psychological trauma and to address the varying degrees of mental and physical disability.

One of the major myths about stroke is that it is reserved for seniors. According to a recent article in the New York Times, “although a vast majority of strokes occur in people over age 65 (the risk is 30 to 50 per 1,000 in this age group), 10 percent to 15 percent affect people age 45 and younger (a risk of 1 in 1,000).”  A study by doctors at the Wayne State University-Detroit Medical Center Stroke Program found that among 57 young stroke survivors, one in seven were given a misdiagnosis of vertigo, migraine, alcohol intoxication, seizure, inner ear disorder or other problems — and sent home without proper treatment.

At Coastal Carolina University, Lecturer, Amy Edmunds continues her educational evangelism for young stroke victims. Since she experienced an ischemic stroke in 2002, at the age of 43, she has been zealous in her campaigns for stroke awareness. Just last week, she hosted a successful Young Stroke Symposium in collaboration with Georgetown Hospital System and the College of Science of Coastal Carolina University and addressed the important theme of building survivor social support.

So if you or someone that you love experiences any of these symptoms: Call 911.

* Numbness or weakness of the face, arm or leg, especially on one side of the body.
* Confusion, trouble speaking or understanding speech.
* Trouble seeing in one or both eyes.
* Difficulty walking, dizziness or loss of balance or coordination.
*  Sudden, severe headache with no known cause.
Unlike a heart attack, most strokes are painless. Even if the initial symptoms dissipate they must be taken seriously.
I am hoping to establish linkages with various regional medical centers here in the Myrtle Beach, South Carolina. My plan is to provide opportunities for stroke and heart patients young and old alike to describe their journey from first attack to recovery in the form of life experience illness narratives. Yes, there are many online opportunities for stroke victims to tell their story and I also recommend Patient Voices, especially this link entitled, “Reconnecting with life: stories of life after stroke.”

Barry Lopez writes, “that sometimes a person needs a story more than food to stay alive.” I could not agree more.

Send me your story.

The Heart is a Lonely Hunter

None of us are ever out of the woods. After a successful triple bypass three years ago, I thought my imperfect heart would beat effortlessly and that I would sail into the autumn of my life. My broken story had run its course and with abundant love from family and friends, I was confident that my heart was mended.

At 4:16 a.m. on a Sunday morning several months ago, I awoke and knew instantly that I joined the more than 750,000 Americans who experience a stroke or a recurrent one. After all, it is the third leading cause of death after heart disease and cancer and strikes one out every six people.

For sure, I am one of the lucky survivors who experienced an ischemic stroke, I prefer to say it was a brain attack event. The doctors tell me that a cerebral embolism refers to a blood clot that forms at another location in the circulatory system, usually the heart and large arteries of the upper chest and neck.

Today my nimble and strong fingers are banging away on my MacBook Pro. Each day I acknowledge how grateful I am that I have fully regained the use of my right arm and speech. My neurologist quietly looked into my face after reading the MRI and Cat scans in her sterile and unpersonalized VA office, “James, you are fortunate that there are only a few deficits apparent in your brain.” Well, heck I could have told her that was a longstanding issue and several women would happily render testimony to this condition.

So the physicians have weighed in and this “brain attack” or ischemic stroke  occurred when a blood vessel that supplies blood to the brain was blocked by a blood clot. The neurologist and cardiologist agree that clot broke off from the heart, traveled to the brain and caused this embolism.

Of course, the daily regimen of Warfarin, coupled with Lisinopril, Metoprolol, and other pharmaceutical interventions appear to be essential to ameliorate my unquiet mind. Each night, the anxiety wells up from some dark place and washes over me like a tsunami. So, a half tab of Tradazone helps chase away the stroke demons for awhile.

Warfarin prevents blood clots from forming or growing larger in your blood and blood vessels. As a result, I must monitor my INR on a weekly basis. The goal of this anticoagulant therapy with Warfarin is to administer the lowest effective dose of the drug to maintain the target international normalized ratio (INR).

Now if the name is not frightening enough, read the fine print accompanying this apparent life saving drug: Warfarin may cause severe bleeding that can be life-threatening and even cause death. Tell your doctor if you have or have ever had a blood or bleeding disorder; bleeding problems, especially in your stomach or your esophagus (tube from the throat to the stomach), intestines, urinary tract or bladder, or lungs; high blood pressure; heart attack; angina (chest pain or pressure); heart disease; pericarditis (swelling of the lining (sac) around the heart); endocarditis (infection of one or more heart valves); a stroke or ministroke; aneurysm (weakening or tearing of an artery or vein) and more.

Each week I am fastidious about not eating my leafy greens. Vitamin K and Warfarin work against each other. Vitamin K is a necessary nutrient in the production of blood clots. The liver uses vitamin K to make proteins, which are responsible for the clotting process. As an anticoagulant responsible for stopping blood clots, Coumadin (Warfarin) works against the body’s natural clotting ability by slowing production of vitamin K and clotting proteins in the liver. My prescription is taken in dosages specific to how much clotting protein is in the blood. So I have out of necessity eliminated any green leafy vegetables, such as broccoli, spinach, cabbage, brussels sprouts (that was no major loss) and collard greens. Now, that I am a South Carolinian, no collards translates as an insult to Southern hospitality.

With no leafy greens allowed in my post-stroke diet, I have quickly become an avid forager for behind the scenes recommended tomatoes in all the local markets. This includes,beefsteak, plum, heirloom, cherry, grape and even Campari tomatoes. In fact, I must admit that instead of discussing the the bouquets and flavors of Pinot Noirs, once described in a Vanity Fair article as “the most romantic of wines,” I now artfully evangelize about the various varieties of tomatoes.

Recent articles, journals and even the BBC have proclaimed that “tomatoes are ‘stroke preventers.” They are the perfect antioxidants and that helps prevent strokes. So, I encourage all my family and friends to get their daily dose of lycopene.

At the end of this month, it’s World Stroke Day. The statistics are clear and present that one in six people will experience a stroke in their lifetime. Additionally, younger people are getting strokes at a faster rate, and people under age 55 make up a greater percentage of all strokes, according to a study in the journal Neurology. I encourage my friends and family to support their local hospitals and regional medical centers on this awareness day scheduled for October 29. Sign up now and join the campaign.

Each day, I get stronger and watch my footprints disappear at Surfside Beach. The Atlantic offers a sweet balm for the body and soul. The exercise helps my blood pressure but who can deny that the waves and the salt water does not heal. It’s mid October and I am chest deep in the ocean and the young local Coastal Carolina University surfers are chasing the waves before the sun sets.
Send me your story. It does matter.

Narratives Help Heal Childhood Traumas

author and art therapist Mary Shannon

I recently communicated with Mary Shannon, author, art therapist and clinical social worker. She is the author of The Sunday Wishbone, a searing memoir, that painfully and poignantly reveals her sexual abuse as a young child at the hands of her mother.

In a recent email with me, Shannon wrote, “Writing is a struggle against silence.”
Throughout Shannon’s career in both clinical and administrative human service positions, she has consistently turned to the arts for their ability to provide insight and healing for her clients. Her myriad of work includes teaching medical students in the Bronx, New York to serving as co-faculty for continuing medical education workshops or presenting at international health and humanities conferences.

In an article published in The Independent, Zoe Hilton, policy advisor for child protection at the National Society for the Prevention of Cruelty to Children (NSPCC), acknowledges that “Professionals in all areas of the system tend to be disbelieving of cases of female sexual abuse”. In her role at the NSPCC, Hilton is responsible for lobbying the Government and advising on what systems need to be put in place to tackle the sexual abuse of children across the board. She argues that – as a first step – there needs to be “far more training and education and greater reporting of female sexual abuse when such cases do come to light”

It takes much courage to write about the abuses and loss of innocence from childhood.  How does one ever answer the question of how those individuals that one trusts and loves could ever inflict injury and harm on a child? For sure, Mary Shannon’s narratives continue to rescue and heal her in many ways. I might add that she recently earned a second master’s degree from Columbia University in narrative medicine in Dr. Rita Charon‘s celebrated program.

Here is a link for Mary Shannon’s recent story, “Reconstructing a self” published in the Hektoen International journal.
Mary earned a second master’s degree from Columbia University in narrative medicine in 2010, and her first master’s in clinical social work in 1988.   She has done post-graduate work in medical art therapy at UC Berkeley, and served as a clinical bioethics intern at the world renowned MD Anderson Cancer Center under a National Institute of Health grant.

Throughout her career in both clinical and administrative human service positions, Mary has consistently turned to the arts for their ability to provide depth, insight and healing for herself and her clients. She continues to teach medical students in the Bronx, New York, to serve as co-faculty for continuing medical education workshops or and to present at international health and humanities conferences.

I encourage readers to read her impactful memoir.

Voices from Stroke Victims

Kathy & Steve Boncher offer support to stroke victims

Heart disease and stroke, the first and third leading causes of death for men and women, are among the most widespread and costly health problems facing our nation today. According to Centers for Disease Control and Prevention, in 2007, of all Americans who died of cardiovascular diseases, 150,000 were younger than age 65. Again, heart disease and stroke also are among the leading causes of disability in the United States, with nearly 4 million people reporting disability from these causes.

Steve and Kathy Boncher, high school sweethearts and life long partners share their story of support and survival. They have also produced a Stroke Recovery Journal.

Look around not only in your extended family but the next time you are out shopping. The signs of stroke and the many faces of its victims are so visible. The road to recovery is often challenging for stroke patients, who often have to relearn basic skills, including how to communicate.

Here’s Steve’s story from the shared husband and wife blog. They write that the purpose of the blog is to inform readers how a stroke affected their lives, enabling other stroke survivors, families and caregivers to find peace, hope and encouragement.

In addition, to this compelling story, I came across this multimedia site offering the voices from stroke patients found on The New York Times page. These courageous individuals offer us such compelling narratives.

Send me your story.